How will I know if AN is swelling?

[Upstate]

It has been 3 months since GK.  I guess now is the time swelling can occur, is that correct?  What symptoms would I have if there is swelling?  I realize individual results may vary, but with every twitch or tingle I panic and wonder if its due to swelling.  Also, do I need to call my doctor ASAP if I develop these symptoms? 

Upstate

[KBL]

Hi,  I had CK, I don't know if they have the same issues later.  I had a few minor lip twitches, I was the only one who could notice them.  After 6 months my face started to get paralyzed.  I think the first noticable sign was the left side of my mouth did not go up.  On the 3 rd day I called the Dr.  He ordered an MRI and sent me back to my neurologist.  So, from the time I called him until I was put on steroids, a full week passed.  I have no idea if the steroids would have helped if I had gotten on them sooner.  
I just thought I would share my experience.
I wish you well.  Karen

[Bonnie B.]

Hi Upstate,
I had my GK three months ago.   I only feel a fullness in my left ear along with twinges in my good ear.  I don't know if that is normal or not.   I too would like to hear from people who have experienced symptoms of swelling after GK or CK and at what point post GK/CK they happened.

I would also like to hear from people who experienced NO symptoms.

Bonnie

[Jim Scott]

This probably isn't too helpful because I underwent FSR (not GK or CK) on a 'debulked' AN (in 2006) but I thought I would throw it into the discussion for whatever it may be worth to anyone. 

I didn't experience post-radiation symptoms but a (pre-scheduled) MRI scan 90 days after the completion of my 26 FSR treatments did indicate some swelling was occuring.  Because I was asymptomatic, no steroids were prescribed.  My next MRI, 3 months later, showed the swelling had abated.  I never experienced headaches as a result of my debulking surgery - or the radiation.  Later MRI scans indicated the tumor was experiencing necrosis and the beginnings of shrinkage.  That was 4 years ago.  No symptoms since.  My next MRI is scheduled for 2013.

Jim   

[PaulW]

Symptoms from swelling are no different from normal AN symptoms, but the symptoms can get worse for a while.
So all the symptoms that exist its possible that you will experience some of them, and some symptoms could be new.
Its normally temporary, if you are worried of course ring your doctor. Sometimes they will prescribe steroids, for hearing loss in particular.
I found around the 5 month mark the most problematic, but then things got better after that.
Its a slow process.
 
Not all tumours swell, many dont. A lot depends on the size, location, and the condition of your balance and hearing nerve.
If your balance and hearing nerve are already gone, there is a good chance you will get very few symptoms.

One thing I have learnt, is that if you are getting symptoms sometimes thats a sign things are getting better not worse.

After every bout of tinnitus and dizzyness I often found my hearing improved just a little bit, and the tinnitus subsided and the balance got better. After two years my hearing has actually come back to within normal range, tinnitus has improved and so has my balance.

 

[Tisha]

My most severe symptoms did not occur until 16 months post CK and lasted about 18 months.  3 weeks after CK I had sudden hearing loss, but that came back with massive amounts of steroids.  Then I had absolutely no symptoms for 15 months...I thought I was one lucky gal!  Then one day I started experiencing nystagmus (your eyes shift back and forth quickly, it's different than vertigo).  I had to go on steroids again, and it made it stop.  I then found that mezclizine helped quite a bit and started on that.  It would hit me on and off quite regularly for a year...then it slowed down somewhat the last 6 months.  I haven't had a nystagmus attack for 7.5 months now, but I do have wonkyhead on a regular basis.  I might got 2 months with nothing...then have it everyday for 2 weeks.  Back and forth.  I take 5mg Valium and that really helps it quite a bit.

I found that the timing of my symptoms matched the timing of the most swelling (from MRI readings), so that makes sense I suppose.

You've heard it before...but everyone is different, every AN is different.  Good wishes for you on your AN journey.  Tisha

[chloes mema]

I, too, am interested in answers for this.  I met with my radio-oncologist last Friday, asked if / when swelling would take place.  His answer was that if it were going to happen it would have happened already (I'm barely a month out from completion of CK).  I dearly love this doctor but truly wonder if he has any clue of what goes on with an AN patient after CK (most of his answers to my questions have not been "in line" with what I've read).  Have noticed today that the left side of my face feels "tight", have been more tired this week, my left eye has started twitching, and wonkiness is worse.  Are these all beginning symptoms of swelling or just part of the new "normal"?

Karen

[Tisha]

I think there might be some initial swelling immediately after CK, that is what happened to me.  That is what probably what your doc may be talking about and what brought on my  sudden hearing loss 3 weeks post CK.  But, the tumor didn't get measureably larger until 16 months post CK.  You might want to bring up with your doc things you read on this site.